Yippee! We gave Kiera her last dose of I.V. antibiotics, removed her central line, and sprung her from the joint! She was SOOOO excited when she saw all 4 of us come in today and definitely knew what was up when we started packing. This is great timing because we had already planned to celebrate a delayed Father's Day tomorrow with ALL the kids. Now we don't have to do it at the hospital. Daddy zoomed Kiera around in her stroller and she loved the car ride. Poor thing has been bored out of her mind in her hospital bed and was happy to take a nap in her pack 'n play and play on the floor at home this afternoon. We have some significant changes to work with on her meds and ventilator settings, but she seems back to her base line. We met some new friends in the PICU who maybe needed to meet us too, so all in all the 2 weeks of re-hospitalization, though anxiety inducing, gave us a chance to regroup and hopefully served a larger purpose in the grand scheme of things. I have to say that while repeatedly waiting to take a baby home from the hospital has given me a sense of Zen about waiting in line at the post office and grocery stores, it was difficult to stay patient in line at Albertson's this morning while the lady in front of me took probably 10 minutes to write a check and chit chat (while not writing) about her preference for checks over debit cards while my ice cream was melting and all I needed to do was get it home, put groceries away, and load up the car to go spring my baby. :) I guess next time I "chit chat" in line somewhere I'll try to remember that the person behind me might be on the way to the hospital. :)
Therese
Saturday, June 21, 2008
Monday, June 16, 2008
Kiera signed "Daddy" for Father's Day!
Kiera is improving now that she has a central line in and 5 days worth of antibiotics. She was zipping through I.V.'s left and right and definitely needed something more effective. Her veins are shot after almost 2 years of needle pokes. We had her up in the walker for about an hour yesterday, and she was finally smiling and playing again. I picked her up a book at a garage sale last week..."Peek-a-moo." The characters have flaps to cover their eyes that you pull down to see their faces. Anyway, the last page is a baby, and Kiera was making herself laugh. She'd pull the flap down and giggle when she saw the baby's face. She kept doing it over and over. You could definitely tell she "gets it."
She's been watching her "Signing Time" videos intently, and we've been trying to get her to sign "mommy" and "daddy" for maybe a year. She has clearly understood the signs, but has wanted to do them by grabbing my hand and putting it on her chin or forehead respectively. So Saturday I noticed her tapping her head, more like the sign for "hat," when I said Daddy. On Father's Day, we went in to the hospital after work, and Jer had been napping on the couch behind Kiera's crib. Kiera and I were "talking," and Jer piped in just after waking up. Kiera clearly looked behind her toward him and patted her head in response to hearing his voice. Then she migrated her thumb toward the middle of her forehead with her pointer finger sticking up! Well, of course, she is a genius. ;)
It looks like we will probably be in the hospital another week to finish up antibiotics and get her back on the LTV, but I still have to confirm a plan with the pulmonologist. She is definitely much improved from Friday. Friday she looked as sick as she'd ever been, and it was a flash back to times we'd rather forget. It was good to see her getting back to "normal."
Therese
She's been watching her "Signing Time" videos intently, and we've been trying to get her to sign "mommy" and "daddy" for maybe a year. She has clearly understood the signs, but has wanted to do them by grabbing my hand and putting it on her chin or forehead respectively. So Saturday I noticed her tapping her head, more like the sign for "hat," when I said Daddy. On Father's Day, we went in to the hospital after work, and Jer had been napping on the couch behind Kiera's crib. Kiera and I were "talking," and Jer piped in just after waking up. Kiera clearly looked behind her toward him and patted her head in response to hearing his voice. Then she migrated her thumb toward the middle of her forehead with her pointer finger sticking up! Well, of course, she is a genius. ;)
It looks like we will probably be in the hospital another week to finish up antibiotics and get her back on the LTV, but I still have to confirm a plan with the pulmonologist. She is definitely much improved from Friday. Friday she looked as sick as she'd ever been, and it was a flash back to times we'd rather forget. It was good to see her getting back to "normal."
Therese
Friday, June 13, 2008
Pneumonia Update
Kiera has a pretty bad pneumonia in her right upper lobe of her lungs and is culturing out pseudemonas and possibly strep. After 6 failed attempts at an IV yesterday, they did intramuscular shots of 1 atibiotic for the strep. Then they managed an IV today (YEAH!) and started a dose of antibiotics for the strep and another for the psuedemonas. She had a bedside brochoscopy today and her pulmonologist was able to put some mucomyst down her trachea to focus on bad areas to break up her mucous. She is currently on continuous nebulizers, and after a short bit back on the LTV, is back on the big 840 vent today on much higher support than before...a rate of 40 and 60% O2. They also changed her to pressure controlled ventilation instead of tidal volume controlled. I'd explain...but I'm wiped out.
On the plus side...Kiera was off her feeds today and only getting Pedialyte, so when I got out a juice box, she was so excited she strained to get off her boppy to get my juice. I gave her maybe a dozen tiny sips pipeted through the straw. Then I asked for a popsicle, and she went at it gainbusters...like she's been eating forever. She got orange juice from the popsicle all over her face, trach dressings, and bed. She was pulling it to her mouth. I think she liked being able to control her food. She took SMALL bites off the tip of the popsicle and didn't freak out too much. She let it melt in her mouth and swallowed. I think her face is permanently stained orange now. Maybe I'll have to convert all her food to "on a stick" form. :) She also had a great echo today and is going to stop her Sildenafil (viagra). So does that mean the leftover meds are for us? :) Or should I start spamming all of you?
In that she is on the big vent, high O2, and IV antibiotics, it looks like she'll be in the hospital at least another week making this her longest readmission since her discharge in January. Last night was cute...the male nurse that had her told me that that night was his one year anniversary in the PICU, and Kiera was his very first patient when he was new, so it seemed appropriate that he had her again. He'd been away, and didn't even now she was readmitted till he got his assignment that night. Kiera used to flirt with him before so we say he's her boyfriend. Sure enough, she flashed him a smile when she saw him. I think she likes his red hair. Another funny thing: I was talking to a friend the other day, and I found it funny that my perspective lets me think that ONLY 4 hospitalizations in 6 months is a GOOD thing. What a different world I live in!
Therese
On the plus side...Kiera was off her feeds today and only getting Pedialyte, so when I got out a juice box, she was so excited she strained to get off her boppy to get my juice. I gave her maybe a dozen tiny sips pipeted through the straw. Then I asked for a popsicle, and she went at it gainbusters...like she's been eating forever. She got orange juice from the popsicle all over her face, trach dressings, and bed. She was pulling it to her mouth. I think she liked being able to control her food. She took SMALL bites off the tip of the popsicle and didn't freak out too much. She let it melt in her mouth and swallowed. I think her face is permanently stained orange now. Maybe I'll have to convert all her food to "on a stick" form. :) She also had a great echo today and is going to stop her Sildenafil (viagra). So does that mean the leftover meds are for us? :) Or should I start spamming all of you?
In that she is on the big vent, high O2, and IV antibiotics, it looks like she'll be in the hospital at least another week making this her longest readmission since her discharge in January. Last night was cute...the male nurse that had her told me that that night was his one year anniversary in the PICU, and Kiera was his very first patient when he was new, so it seemed appropriate that he had her again. He'd been away, and didn't even now she was readmitted till he got his assignment that night. Kiera used to flirt with him before so we say he's her boyfriend. Sure enough, she flashed him a smile when she saw him. I think she likes his red hair. Another funny thing: I was talking to a friend the other day, and I found it funny that my perspective lets me think that ONLY 4 hospitalizations in 6 months is a GOOD thing. What a different world I live in!
Therese
Saturday, June 7, 2008
Back In PICU
We admitted Kiera last night. She was very acidotic (high Co2 levels in her blood). She's on the big hospital ventilator right now and on I.V. fluids and a little Pedialyte. We're waiting on stool cultures. We're not really sure what is wrong. It may be just backlash from the virus she seemed to catch on Memorial Day or something else. Her pulmonologist still has to see her today. Her upper right lobe of her lung is very cloudy on her x-ray. I guess the easiest explanation is that she is just "funky." Hopefully this will be a short stay...maybe 4 or 5 days.
Therese
Therese
Wednesday, May 28, 2008
A Memorable Memorial Day
What a weekend! We had so much fun on Sunday, but it wiped us out! We took Kiera to our friends' baby's 1st birthday party at 3PM followed by an early birthday cookout for my sister (and an evening playing rock band). So what does it take for an 8 hour day out with Kiera? :) A WHOLE DAY of preparation. We woke up early, administered meds and nebs, tried some feeding therapy, followed by a bath and trach care. This took till about noon. Then it took about 2 hours for me to pack needed baby gear, oxygen, meds and food to allow us to stay at my sister's till late, along with getting myself ready, and wrapping birthday gifts for the 2 parties. 9 hours out on 3 liters O2 used 2 travel tanks of liquid O2 and had us on 1 of our 2 compressed tanks by the time we left at 11 ish. Since Kiera isn't quite mobile yet, we, of course, needed the walker to help her interact with the rest of the family, her pack n play for a nap later, and her booster seat to join us at the table. I usually try to arrange trips around feeding times so I don't have to pack food; however, that was not possible for this trip so I packed formula to last till 1am, feeding bags, and feeding pump. We usually just use an inline inhaler for nebs while we are out, but again, that wouldn't do for this length of time so we had to pack the nebulizer machine.
Here are some pics.
Belle of the Ball
Party at Jessica's. It got a little chilly later although it was hot most of the day, and I forgot a sweater. 1 thing! Not bad considering.
Anyway, we got home and collapsed, but it was nice to be out and about ALMOST like NORMAL people.
Unfortunately, Monday Kiera came down with some kind of stomach bug. She's been throwing up all her food and has bad diahrea. I've done 3 loads of just her laundry since last night. I have her on continuous pedialyte and had to stop her feeds for the time being. And, ohhh, the diapers! I was up with her most of the night Monday night, but had a nurse last night. The funny thing is, this is pretty much the first NORMAL SICKNESS Kiera has had, so in a weird way, it has been kind of fun. Is that strange?
Also on Monday, my stepsons rode their bikes to the pool, and on the way, Mitch ran a red light to catch up with his brother, and a car hit his bike and knocked him off. His head and arms are scraped up, but generally okay. Thank goodness he was wearing his helmet! His 8th grade graduation is tonight, so he'll have pictures of the battle scars. :) The difficult part through this was that I was stuck here and unable to go get them since I can't drive alone with Kiera. I thought Jer was still in a meeting too far away to get there in a time acceptable to the ambulance drivers. The drivers wanted someone there in 5-10 minutes or they would have to transport him to the hospital since he's a minor. Their mom and stepdad live more than 10 minutes away, as well. Luckily, my parents were available to go get them.
Gotta go. I smell another diaper.
Therese
Here are some pics.
Belle of the Ball
Party at Jessica's. It got a little chilly later although it was hot most of the day, and I forgot a sweater. 1 thing! Not bad considering.
Anyway, we got home and collapsed, but it was nice to be out and about ALMOST like NORMAL people.
Unfortunately, Monday Kiera came down with some kind of stomach bug. She's been throwing up all her food and has bad diahrea. I've done 3 loads of just her laundry since last night. I have her on continuous pedialyte and had to stop her feeds for the time being. And, ohhh, the diapers! I was up with her most of the night Monday night, but had a nurse last night. The funny thing is, this is pretty much the first NORMAL SICKNESS Kiera has had, so in a weird way, it has been kind of fun. Is that strange?
Also on Monday, my stepsons rode their bikes to the pool, and on the way, Mitch ran a red light to catch up with his brother, and a car hit his bike and knocked him off. His head and arms are scraped up, but generally okay. Thank goodness he was wearing his helmet! His 8th grade graduation is tonight, so he'll have pictures of the battle scars. :) The difficult part through this was that I was stuck here and unable to go get them since I can't drive alone with Kiera. I thought Jer was still in a meeting too far away to get there in a time acceptable to the ambulance drivers. The drivers wanted someone there in 5-10 minutes or they would have to transport him to the hospital since he's a minor. Their mom and stepdad live more than 10 minutes away, as well. Luckily, my parents were available to go get them.
Gotta go. I smell another diaper.
Therese
Monday, May 19, 2008
Yay...Kiera started pushing up on her knees!
Okay a few pics and then I'll download the knee video since it takes FOREVER! This afternoon Kiera decided to act like a different baby. I guess she feels better. It coincidentally happened right after her brother got home from school and his friend was here. Maybe she was showing off for a new audience. Anyway, she has NEVER gotten on her knees like this. There have only been a few times for VERY brief moments. The video to come will show her rocking back and forth on her hands and knees! Yay, Kiera!
Just a cute pic of her Pebbles up-do.
Pigtails and an eye patch are appropriate for a pirate, right? She's wearing a dress that was a shower gift from her Great Grandma Wanda.
Therese
Just a cute pic of her Pebbles up-do.
Pigtails and an eye patch are appropriate for a pirate, right? She's wearing a dress that was a shower gift from her Great Grandma Wanda.
Therese
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